Thursday, May 31, 2012

In the News - May 2012

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page. They are stories of inclusion, of advocacy, of education, of hope and of love.  These are from the month of May.


AUDIO indicates an audio clip
BLOG indicates a blog post
EVENT indicates a scheduled event 
LINKS indicates links or resource materials
PHOTOS indicates photos
STUDY indicates a study
THREAD indicates an online discussion thread
VIDEO indicates a video

VIDEOI Have a Voice
LINKS Downs Designs
LINKS Teaching Ending Letter Sounds - Worksheets, Games and Activities

Scientists make stunning inner space observations
BLOG Foundation to expand:  Hero to many helps kids with Down Syndrome
THREAD Just a question about Down Syndrome
Ahern:  Beverly mother is 'fierce warrior' for Down Syndrome Awareness

Petra's Poem shares life of woman with Down Syndrome
PHOTOS Living well with Down Syndrome

Dancing brings new confidence to children with Down's Syndrome
BLOG Found:  The mystery girl with Down Syndrome who's a cruel web joke
BLOG To the new mother of a baby with Down Syndrome

I'm going to cut off my hair and give it to the poorly girls who don't have any

Kent State Student Excels Despite Down Syndrome

Looking for Suffering in All the Wrong Places

Lauren Potter Plays Becky Jackson On Glee--Now Check Out the Amazing Work She is Doing Off Set, Too!

Passion for Fashion Drives self-taught Port St. Lucie artist with Down Syndrome

Cheerleader with Down Syndrome inspires classmates

'She Inspires Us All':  How a cheerleader with Down's Syndrome became homecoming queen and touched a community
Church lift ban on Catholic boy, 8, taking Holy Communion because he has Down's Syndrome after outcry

Life and love with a Down Syndrome child
LINKS Risk of Heart Disease in Down Syndrome
VIDEO Emmanuel Bishop (Age: 15), Violin recital at Selçuk University

Hate crime victim is praised and admired
VIDEO Royal Oak Dancer with Down syndrome wins gold at regional competition

Mesquite High School Yearbooks Pulled after "Mentally Retarded" Used to Describe Some Students

R-Word - Spread the Word to End the Word

Tuscaloosa teen with Down Syndrome inspires a community
BLOG Surviving at Sea (send a boat please)
BLOG Why it Matters

What's Working:  Service Station Hires Special Needs Employee

Brady Kanavel has been an ambassador at West Muskingum High
BLOG R-word.  Do you cringe?
EVENT Olympic Torch Relay:  My stage in honour of people with DS worldwide

NZ's first Scout leader with Down Syndrome

Having a Ball
BLOG What is going on here?!? Autism, Uneven Development and Periods of Consolidation

Paul's Posting

Walgreen's Expands Disability Employment Effort Nationwide
EVENT Down Syndrome Dublin Events
VIDEO Peter Rosset's Music Channel
BLOG Beaches, Buddies and the Undercurrent of Down Syndrome
VIDEO Down Syndrome Research Foundation PSA
VIDEO Special Olympics Illinois PSA "Speechless"

Mum speaks up for children with Downs

Down Wit Dat hosted the third T-21 Blog Hop on May 21.  Don't miss our next one on June 21!

We also started our own Facebook Group!  Down Wit Dat - The Group is an all inclusive special needs discussion forum.  Join the conversation!

...And that's the news.  Keep the stories and information coming!

Sunday, May 27, 2012

A Smooth Road

"A smooth road to London town
A smooth road to London town
The road goes up
The road goes down
A smooth road to London town
By and by we come to a dell
Where the roads are not so swell
A bumpy road, a bumpy road
A bumpy road to London town..."
--Smooth Road to London Town (Children's Song)

Our life right now probably won't seem very interesting to most outsiders.  We're in one of the in-betweens;  waiting for the results of the last set of the appointments as we wait for the start of the next round.  It's an odd place to be, this in-between.  We're not quite anywhere, but rather on the way somewhere.  We're also not sure where this trip is taking us, but we are inside, out of the elements and content to let the sway of the carriage lull us to sleep.  There may be brigands and cut-throats and all manner of wylde beasties lurking outside, but for now we are content to curl up and have a conversation.  Occasionally one of us will look out a window and remark on one landmark or another, but for the most part we are pleased with passing the time together.

We've rumbled by a few milestones with Wyatt in the last little while.  He got his first tooth the other day;  after months of sore red cheeks and gums, it finally broke through.  The one next to it should be arriving in a few days.  In case you are following along:  Quinn has two adult teeth and just lost another, Zoe has seven and Wyatt has one and is working on his second.  He has been able to "chew" food for some time now;  adding teeth to the mix just ensures I can increase the texture of things a little bit more.  Thursday,  for example, I made a whole batch of toddler meatballs for the twins.  They are so very easy to make and all my kids have loved eating them.  Zoe was a little hesitant at first, looking from the meatball on her tray to her father, back to the meatball and then to her father again, as if to say "WTF is this?!".  Wy didn't hesitate and popped two into his mouth.  One thing that we really have to be careful with him with is choking;  not because his swallowing is sub-par, but because he is prone to stuffing too much food in his mouth at once.  He also tends to get a stash going in his high palate and if we're not paying attention, can still be eating/possibly choking several minutes after we think he's finished.

There has also been the first (confirmed) "Dada" out of Wyatt.  Both babies have been babbling "dadadada" and the like for months, but Zoe has been calling Sean "Dah-dih" for some time now.  We're both pretty convinced that Wyatt's "Dada" was intentional as a)  it came out singular (no repeating dadadada over and over like he usually does) and b) he reached for Sean as he said it.  I'm not sure about Dada himself, but I was a little teary eyed.  It will probably be a long time before either twin says "Mama" though... If they are anything like their older brother it will be next year some time.  Quinn's first words, in order, were "Dada", "Kitty" and "Guitar".  Shortly after that, he started calling me "Lady".  It was months down the road before he finally called me "Mommy".  Now I'm "Mom" (or "MaaaAAAWWWmmm") most of the time, which makes me a little wistful, actually.

Wyatt's reaching and overall movement has increased lately too.  We sing with all the kids, but we have played a little game with Wyatt since he was able to sit up (supported) on our knee.  One of the action songs from Mother Goose called "Smooth Road to London Town" is his favourite.  Sean has modified it slightly to emphasize the part where "the road goes up", so he can make a point of lifting Wyatt's arms up in time.  This is followed immediately by "and the road goes down" where Sean lowers his arms and leans him forward (he used to flop forward on our tummies before he could sit up).  I hadn't sung it to him for a while and was pleasantly surprised by his progress recently.  He was balancing himself nicely on my knee and was holding my two index fingers gently when we started.  When we got to "the road goes up" part, he got a big smile on his face and lifted his arms and my fingers up by himself and then started to lower them for "the road goes down"... and patiently waited for me to continue with the more bouncier parts of the song.  I was astounded.  I remember him a few months ago anticipating "the road goes down" by nodding his head forward and tugging slightly on our hands (as they held his), but this was awesome!  Zoe, by this point, was strutting around the room with her arms up over her head and shouting as if she was announcing a touchdown, but Wyatt was as pleased with himself as I was and we continued on with two more quick trips to London Town (well, in song, anyway). 

Our OT visit was cancelled this week so we found ourselves with a morning off.  By "off" I mean "slightly unscheduled", as we still had things to do.  However, we were able to take it easy and sit around for a couple hours while the babies played and we talked.  It was a rare treat, to be honest... to feel as if we didn't have to rush off or do something.  We also got to complete a whole conversation (how long has it been since that has happened?).  The time passed quickly, as all stolen time does, but it was refreshing.  It gave us a nice little pause in what would turn out to be a very busy and draining week.  Our appointment was rescheduled for Tuesday, so I am sure we will pick up there where we left off. 

This little leg of our journey together may not be the most spectacular or the most in depth, but sometimes you need to just keep going and see where you end up.  For now, we are content to count teeth and sing songs and marvel at our children as they grow and develop.  It's not a trip for everyone, but it suits us just fine.  I'm sure the scenery will eventually change and bumpier roads are indeed ahead.  For now, however, no matter how up and down, it's still a pretty smooth road to London Town.

Monday, May 21, 2012

A Brief History of Down Syndrome, Part 3: All In the Family

In the two previous "A Brief History..." posts, we've explored how Down syndrome came to be named, as well as looking at (pre)historical evidence of Down Syndrome.  In a recent article, Washington Post reporter George Will published a photo essay about his son.  It got me thinking... what other famous people have had a relative with Down Syndrome?

Mantegna's Madonna and Child, circa 1460
At this point in time, there are many people with Down syndrome that are cherished by their famous family members.  Included are: actor Jaime Foxx's sister DeOndra, actor John C. McGinley's son Max, Barnes and Noble CEO Steve Riggio's late daughter Melissa, Football coach Gene Stallings late son Johnny, and baseball superstar Albert Pujols' daughter Isabella (just to name a few).  These much beloved people are fully integrated members of the family.

Is this a product of this day and age however?  Once again, being the most common genetic disorder and occurring in 1:700 live births, you would think there would be more information on those that had gone before. I went searching for historical figures and found quite a few.

Andrea Mantegna and Ludovico Gonzaga

As I have mentioned before, it is rumoured that 15th century painter Andrea Mantegna, the artist who painted Virgin and Child with Saints Jerome and Louis of Toulouse and Madonna and Child had a child with Down syndrome, as did his sponsor Ludovico Gonzaga who employed him as his court painter.  This has been suggested by numerous sources as playing a large role in Mantegna's appointment in Mantua.  The Gonzaga child was described as having "an illness" and that Mantagna's child shared the same description. 

Anselmus de Boodt 

The Transfiguration Triptych, depicting the de Boodt family, including Anselmus and his sister with Down Syndrome

Anselmus, his father and six brothers
Anselmus de Boodt, mineralist, scholar and physician to Rudolf II of Prague had a sister with what was most likely Down Syndrome.  Two panels of Gerard Davis' triptych Transfiguration depict the de Boodt family (the portraits themselves painted by Pieter Porbus in 1573)  They can be found in the Onze Lieve Vrouwekerk (Church of Our Lady) in Bruges, Belgium.

The panel on the left depicts his father (Anselmus de Boodt Sr.) with his seven sons.   Anselmus de Boodt is depicted in the centre directly behind Anselmus Sr.  The red crosses on the heads of some of the children (just above the forehead on three of the boys) denote that these particular individuals were no longer alive at the time the portraits were painted.
Anselmus de Boodt's Mother Jeanne and his three sisters

It is the panel on the right that is of interest here. It depicts Anselmas de Boodt's mother Jeanne and his three sisters (one of which had also passed on as her portrait bears a red cross). It is the sister directly behind Jeanne that reportedly had Down Syndrome.

Although little is known about her or her life, it cannot be denied that this portrait exhibits many of the hard markers of Trisomy 21, including a soft bridged, small upturned nose and epicanthal folds.

Charles Darwin

Emma Darwin and Charles Waring

Charles Waring Darwin was the 10th and final child of naturalist Charles Darwin and his wife Emma. It is suspected through description and the one surviving photograph that exists of him that he was born with Down Syndrome.

Henrietta, one of his daughters, had this to say about Charles Waring in her book "Emma Darwin, A century of family letters...":

"The poor little baby was born without its full share of intelligence. Both my father and mother were infinitely tender towards him..."

Charles Darwin himself had this to say about his youngest child:

“He was small for his age and backward in walking and talking.... He was of a remarkable sweet, placid and joyful disposition, but had not high spirits.... He often made strange grimaces and shivered, when excited.... He would lie for a long time placidly on my lap looking with a steady and pleased expression at my face... making nice little bubbling noises as I moved his chin.”

Looking at the photograph of the then 45 year old Emma and her newborn son, it is not hard to see what appears to be a "weakened" bridge to the nose and quite possibly be epicanthal folds.  However, the photo is extremely grainy and we will never know for sure.  Charles Waring Darwin passed away from Scarlet fever at 19 months of age, never having learned to walk or talk.  Darwin Sr.  recorded in his journal that day: "Poor Dear Baby Died."  He was unable to attend the first reading and publication of his theory of Natural Selection due to the illness and death of his youngest son. 

John Langdon Down's grandson and namesake had DS
John Langdon Down

John Langdon Down, the "father" of Down syndrome never met his grandson (and namesake) who had what would eventually be named after him.  It was John Sr's. son Reginald, whose first son John Langdon (born 1905) probably shaped his father's less than charitable view on those with "Mongoloid idiocy".  John Sr., from all accounts a kindly man, would probably not have been fond of Reginald's theory that since some of the symptoms did not appear in actual Mongols, it;

"...must be a reversion to a type even further back than the Mongol stock, from which some ethnologists believe all the various races of men have sprung."

This of course was taken one step further by his contemporaries who felt that this condition was a regression to the level of an orangutan. 

Despite his father's take on things (due, quite possibly to a degree of perceived grief), John Langdon Down the younger grew to be a much loved member of the family and died in the ancestral home at age 65.

Wilhelm, Crown Prince of Germany

Crown Prince Wilhelm and Alexandrine

Crown Prince Wilhelm, or William as he was know throughout Europe, was the last crown prince of the Kingdom of Prussia.  His fifth child and first daughter, Alexandrine (or "Adini") had Down syndrome. It is said that she was very much a part of the family, despite the popularity of the Eugenics movement at the time.

Born in 1915, Princess Alexandrine was welcomed into the
family.  There are numerous christening and family photos of her online, including some with her brothers and sisters. She was educated privately at a school for special needs students called Trüpersche Sonderschule in Jena, from 1932 to 1934.  Rumors abound about her life after that.  One version of the story states that she was institutionalized after the age of 20;  proponents of this theory cite the lack of photographic evidence after that age.

With her siblings:  Friedrich, Cecilie, Wilhelm and Louis Ferdinand
Another version has her living out the war in Niederpöcking in Bavaria and then retiring to a house near Lake Starnberg.   Her death in 1980 indicates that she was spared Hitler's Aktion T4, quite possibly due to her royal heritage and her father's open support of Hitler through his rise to power.  There is a distinct shortage of information on her adult life however, so it is unknown exactly how she spent the last 45 of her 65 years. 

Charles De Gaulle

Charles De Gaulle and his daughter Anne
General Charles De Gaulle is well known throughout modern history as the leader of the Free French Forces.  What is not as well known is that his youngest daughter Anne (January 1, 1928 - February 6, 1948) had Down syndrome.

Although public perception of the time was that children born with Down syndrome were a result of their parents alcoholism, venereal disease or overall degeneracy, the De Gaulles rejected this notion, choosing instead to raise Anne like their other two children.  Their personal life became very private and Anne was raised at home, not in an institution (as was common practice at the time). 
Charles and Anne on holiday in Brittany, 1933
It has been said often that Anne was Charles' favorite child.  Described as a man who ranged from cocky to stoic by nature, he was a different person around Anne, reportedly describing her as "My joy".  He is said to have read stories and sang songs to her and showed an affection that he rarely showed others, even those in his own household.  Anne was raised to feel no less or different than anyone else.

After the war, Charles and his wife Yvonne founded the Fondation Anne de Gaulle, a home for disabled girls, many of which had intellectual impairments.  In 1948, Anne succumbed to pneumonia, a month after her 20th birthday and died in her father's arms.  Upon her death, he is said to have remarked "Maintenant, elle est comme les autres." ("Now, she is like the others.").  He carried a portrait of Anne with him at all times;  he claimed that her portrait saved his life by stopping a bullet in an assassination attempt in 1962.  When Charles died, he was buried beside his beloved Anne.

Arthur Miller

In stark contrast to Charles De Gaulle is Arthur Miller.

Miller married his third wife, Inge Morath a year after divorcing Marilyn Monroe.  Seven months later Inge gave birth to Rebecca, a child described as "stunningly beautiful".  They doted on their child, her first and his third and took her everywhere.  Four years later, their son Daniel was born.   The following are excerpts from Suzanna Andrews article in Vanity Fair:

"The Broadway producer Robert Whitehead, who died in 2002, would tell Martin Gottfried that Miller called him on the day of the birth. Miller was "overjoyed," Whitehead said, and confided that he and Inge were planning to name the boy "Eugene"—possibly after Eugene O'Neill, whose play Long Day's Journey into Night, which had won the Pulitzer in 1957, had awed Miller. The next day, however, Miller called Whitehead again and told him the baby "isn't right." The doctors had diagnosed the infant with Down syndrome..."

"Arthur was terribly shaken—he used the term 'mongoloid,'" Whitehead recalled. He said, "'I'm going to have to put the baby away.'" A friend of Inge's recalls visiting her at home, in Roxbury, about a week later. "I was sitting at the bottom of the bed, and Inge was propped up, and my memory is that she was holding the baby and she was very, very unhappy," she says. "Inge wanted to keep the baby, but Arthur wasn't going to let her keep him." Inge, this friend recalls, "said that Arthur felt it would be very hard for Rebecca, and for the household," to raise Daniel at home. Another friend remembers that "it was a decision that had Rebecca at the center.

Within days, the child was gone, placed in a home for infants in New York City. When he was about two or three, one friend recalls, Inge tried to bring him home, but Arthur would not have it..."

At the age of four, Daniel was placed in the Southbury Training School, once the choice of care for the rich and wealthy, it had degenerated by the 1970's.  Living conditions were overcrowded, understaffed and generally horrific.  Unlike most of the other residents, Daniel's mother visited him almost every Sunday.  Arthur, it was reported, never wanted to visit.  Daniel lived at Southbury until age 17 when, with the permission of his parents, he was allowed to live in a group home setting and gain some independence.

By all accounts, Daniel blossomed after his release.  A natural athlete, he became involved in the Special Olympics and competed in skiing, bowling, track and cycling.  He became an active self-advocate and member of People First.  It was through that organization that he finally met his father many years later.  Both were attending an advocacy conference where Arthur was speaking;  it was said that Miller was stunned when Danny ran over and gave him a large hug.

It was finally in the 1990's when Arthur got to know his son.  From the Vanity Fair article:

"The following year, Rebecca Miller married Daniel Day-Lewis, whom she had met on the set of the movie adaptation of The Crucible. Day-Lewis, says Francine du Plessix Gray, "was the most compassionate about Daniel. He always visited him, with Inge and Rebecca." Some say he was "appalled" at Miller's attitude toward his son, and it is possible that Day-Lewis influenced Miller to make his first appearance, sometime in the late 1990s, at one of Daniel's annual "overall plan of service" reviews. The meeting was held in Daniel's apartment and lasted about two hours, Godbout recalls. As Arthur and Inge listened, the social workers who worked with Daniel discussed his progress—his job, his self-advocacy work, his huge network of friends. Miller "was just blown away," Godbout recalls. "He was absolutely amazed at Danny being able to live out on his own. He said it over and over again: 'I would never have dreamed this for my son. If you would have told me when he first started out that he would get to this point, I would never have believed it.' And you could see his sense of pride. Danny was right there, and he was just beaming."

Miller did not attend another of Danny's year end reviews, nor did he attempt a relationship with his son.

When Arthur Miller died, he did bequeath Danny a full quarter share of his estate.  Unfortunately, this disqualified him from any government assistance and left him open for the state to attempt to reclaim monies from past care.  Which happened, shortly thereafter.  As of 2007, however, Danny still lived in a home with an elderly couple that take care of him and consider him part of the family.

Beyond Miller, de Gaulle, et al.

As it is the most common genetic disorder, there have probably been many famous people with a relative with Down syndrome. Due to public perception (and persistent misinformation), it is within the realm of reason to believe that there are many that we will never know of.  There are probably thousands born to the cultural elite in the last two centuries that have been given away, institutionalized or simply killed outright.  We will never know.

However, it is very heartening to see that in the face of doing "what is done", many people of note have chosen instead to raise their child as any other.  With the exception of Arthur Miller, I have presented several families that have chosen to welcome and nurture, instead of discard.  As a result they have been able to see for themselves the uniqueness and joy that having a family member with a little extra can bring.

It is a Charles de Gualle quote about his daughter that I think of most often in my own life with my son.  Since Wyatt's birth I seem to be a changed person, to be more aware and more sensitive to the world around me.  I have spoken many times how my son's smile or the smallest of accomplishments can lift my spirits and give me energy.  De Gaulle too must have felt this way as he said once of Anne: “She helped me overcome the failures in all men, and to look beyond them.”.  It is my hope that pioneers like de Gaulle, Crown Prince Wilhelm, Darwin and even the de Boodt, Gonzaga and Mantegna families will help us, as a society, overcome the failings of those that have gone before, so that we may provide the brightest future possible for those with Down syndrome.

Andrews, Suzanna, Arthur Miller's Missing Act, Vanity Fair, September 2007.

Baker, Graeme, Arthur Miller had a secret Down's syndrome son, The Telegraph, August 21, 2007.

Baur, Patricia E, Public Man, Private Father, Patricia E Baur:  News and Commentary on Disability Issues, June 4, 2007.

Darwin, Charles. R. 'Journal' (1809-1881). CUL-DAR158, p. 37 recto, 1858

Fenby, Johnathan,  The little girl who conquered de Gaulle, The London Times, June 15, 2010

Litchfield, Henrietta E., "Chap. XII." Emma Darwin, A century of family letters, 1792-1896.

Lost Hospitals of London, Normansfield Hospital, date unknown.

Geiss, Herbert, The Perfect Jeweller - Anselmus de Boodt at the Court of Rudolf II, Friends of Jade, November 2006.

Nicol, Caitrin,  At Home with Down Syndrome, The New Atlantis, Spring, 2008.

Starbuck, JM, On the Antiquity of Trisomy 21:  Moving Towards a Quantitative Diagnosis of Down Syndrome in Historic Material Culture, Journal of Contemporary Anthropology, October 2011  

Steensma, David P., Down Syndrome in Down House:  Trisomy 21, GATA1 mutations, and Charles Darwin, Blood, vol 105, no. 6, pg. 2614-2616.

Timpson, Trevor, A Fame only in Name, BBC News, June 7, 2005

Ward OC. John Langdon Down: The Man and the Message. Down Syndrome Research and Practice. 1999;6(1);19-24.

A Brief History of Down Syndrome: Part 1, Part 2, Part 3, Part 4, Part 5, Part 6, Part 7

Thursday, May 10, 2012

On Motherhood

This Sunday is Mother's Day. Although it is celebrated on different days all around the world, most cultures set aside a day to appreciate our Mothers and all that they do for us. Sunday morning will probably see my news feed awash with photos of homemade cards, breakfasts in bed and flowers, some of which, undoubtedly picked by tiny fingers (and quite possibly from the neighbour's garden). It's a day of emotion for most, of remembrance for some and celebration for many.

It is such a powerful word, "Mother".  It invokes many of its permutations, from the sacred to the profane, all of which is dictated by our life experiences.  The word, this title, means so much to so many people.  As a culture, we like adding little specialty titles too:  "Working Mom", "Blogging Mom", "Stay-At-Home" Mom,  even "Absentee Mom".  There is also "Special Needs Mom", but we will get to that one later.

Becoming a "Mother", for me, was life changing. Gone was the egocentricity, the partying, the sense of entitlement. It wasn't just about me any more, it was about this little person. This new sense of "us". Instead of two people in orbit around each other, we were now three, a cohesive unit. It was wonderful and terrifying all at once. Previous to this, I had spent countless hours at the gym, the salon, the nail salon and the mall, shopping for new clothes and new ways to combat my 'age'. I needed to look better, was the thought, to look more like the ideal and inflate what I recognize now as an appalling lack of self-confidence. I spent countless dollars at the liquor store too, trying to soothe myself after the rest of it 'didn't work'. I am one of those people that motherhood changed for the better. I will admit that wholeheartedly and face any criticism that may generate.

After a rough entrance into this world, my son had a mother.  Me.  I was somebody's Mother. (Eek!)

I entered a second phase after my year of maternity leave as I returned to work.  As a "Working Mom", I was supposed to have it all:  a faboo job, a clean house, carefully scheduled play dates and homemade banana bread cooling on the counter.  I did too... well, most of it.  My house, like most, has stages of 'clean'.  However, I still baked the banana bread, I still sat down every day with my son and went through his day and did activities together.

Flash a few years in the future as I have my twins.  Becoming a mother this time meant a whole lot more things.  There were more labels.  Now I was a "Twin Mom" and most notably, a "Special Needs Mom".  It can be a bit confusing at times as the first title usually makes people squeal with glee.  The second one usually elicits a completely different reaction.

Stupid human tricks aside, it's the last one that has caused the most growth and simultaneous heartache/joy.  To be clear, it's not my son that causes me heartache as my critics would contend;  it's society as a whole. I'm not just talking thoughtless vocabulary choices as there are still a lot of people out there who don't have the foggiest idea what 'special needs' are.  In my example, I have a son, a twin, who has Down Syndrome, the most common genetic disorder that occurs in 1:700 live births.  You would think people would know a little more about it.  Instead, I find myself railing against a public perception that is somewhere between 40 and 80 years out of date.  There is a lot of ignorance out there, ranging from being told that my son will break apart my family or should have been aborted, to more milder forms, usually involving a "I didn't mean it that way" or "you're too sensitive". 

I read an article the other day that certainly captured most of it.  Called "7 Things You Don't Know About a Special Needs Parent", it hits the mark on a few points.  Please understand, these are not things that we experience every day, or feel all the time.  But, we will run into all 7 of these things at least once in our lives.  It happens.  I don't begrudge my friends with neurotypical children their pride at their children's accomplishments;  I will admit an occasional pang when listening to a laundry list of some of the more inconvenient aspects of their child's behaviour.  Again, it happens.

Becoming a "Special Needs Mom" can sometimes mean a whole new level of advocacy.   I've joked in the past that this job came with a sword and magic helmet, along with the ass kicking boots that come standard issue with being a "Typical Mom". My thoughts right now are with my friend M who is fighting with an area school board to allow her son admission in the fall.  She has been told that he is "too small", that they do not "encourage sign language", that they "don't have children with Down Syndrome".  It is completely appalling as M lives in the next county, forty minutes up the street from me.  My elder son has had a special needs child in his class both years of kindergarten;  there are many integrated special needs children in his school.  It is not a 'special' school or a trial school, just your average neighbourhood elementary.  It is pathetic that a forty minute drive can mean the difference between acceptance and complete ignorance. 

That is not to say that being a "Special Needs Mom" is any more important than any other type of Mom, because it isn't.  That is one of the pitfalls of this job, to think that this particular journey is any more important or difficult than any other.  I have no idea what it is like to be a "Single Mom" or a "Same Sex Mom", a "Step-Mom", an "Adoptive Mom" or any other title that we can apply to this job.  Despite the content of this blog, it's not my "Special Needs Mom"-ness that defines me any more than my "Twin Mom"-ness or my plain ol' "Mom"-ness.  I'm a Mother, just like the other millions out there.  We all bring our uniqueness to this title, but in the end, we are all the same deep down.  We want what is best for our children. We want a roof over their heads and food in their bellies.  We want them to grow up to be happy, productive adults.

This Sunday we will enjoy the many flavours of Motherhood.  Whether we biologically or adoptively assumed this role, we all have lots in common.  We forget that sometimes.  We all have our quirks, or specialties and even our weaknesses. We all have discovered strengths that we never thought possible.  "Mother" is the most demanding and most rewarding job I know.  It doesn't matter what prefix you put in front of it.

“Why do people say 'grow some balls'? Balls are weak and sensitive. If you wanna be tough, grow a vagina. Those things can take a pounding.” - Betty White

Friday, May 4, 2012

What a Long, Strange Trip it's Been

The last little while has been a complete blur of appointments and late nights.  Copious amounts of carbs have been consumed (and cheese, most often together).  Much sleep has been lost or interrupted.  Tempers have been a bit short on all accounts, including both of us, the kids and the people that we have had to interact with.  At various points, this past week has seemed to never want to end.

It started the day after the birthday party (Monday, April 23rd).  We had an OT visit where several things were looked at in detail.  One, how well Wyatt's mobility has come along in the last few weeks.  Since the last update, he can make his way across the floor, half dragging, half commando crawling.  We have not seen him sit up (by himself) since the party, however he has come very close several times.  It's probably like the rolling thing;  we won't actually see him doing it for a while.  We'll just look over and assume he just teleported, or in this case, was magically repositioned while we weren't looking.  We are trying to get him to understand what his legs and feet are for (other than additional hands);  we have a variety of sitting/kneeling/bent over positions for him to practice and to get used to putting some weight on his legs.  So far, not much, but we are trying.  Point of interest number two:  how far his eating skills have come in the same amount of time.  We talked about finding a good time for another speech-language assessment before the OT left.  We should have an appointment by our next visit.

The following day (April 24th) meant an appointment with the pediatrician for both Wyatt and Zoe.  I don't know about you, but a snotty receptionist can really set me on edge.  This one in particular seems to have majored in Passive-Aggressive with a minor in Bitch.  The day before, she had telephoned to confirm our appointment.  During that call, no actual appointment time was mentioned when she spoke to my husband; I assumed I had the correct time listed in my phone.  You will imagine my surprise as I blustered into the office, 15 minutes early (for a change!) only to be met with cold silence.  Once I had dug out our health cards and settled my daughter (who had just had what could only be a harrowing stranger experience in the elevator with a kindly old man who told us all about his twins), I turned to face the receptionist.  She barely made eye contact, quickly scooped up the cards and said quietly "I just called your house."  "Oh?"  I answered, confused.  "What's wrong?"  "You're half an hour LATE!" she informed me in clipped tones, barely containing her hostility.  I whipped out my phone to check the times and surprise, there was no match.  For some reason, our appointment had been moved to 9:45.   My husband (to the receptionist's surprise) walked in a minute later and reminded her that she did not mention a time on the phone and therefore, did not confirm the appointment properly. Mistakes had been made all around.  There was another period of awkward silence, where I prepared to get comfortable in the waiting room as I figured she would now make us wait.  A few minutes later, she approached the babies with artificial sweetness and told us that it was time to come in.  We maneuvered our beast of a stroller through the narrow hallways into the exam room and began to get them undressed for their weigh in.

Aside from that little bump, the rest of the appointment went well.  There was no one else in the office at that time, so the doctor was able to see us.  Zoe now weighs 9.14 kg (20.1 lbs) while her now little brother Wyatt weighs 7.95kg (17.49 lbs).  They are both small for their age, at 70cm (27.6 inches) and 67cm (26.3 inches), respectfully.  Their big brother Quinn was 25 inches at birth, just to offer up a little comparison.  Both rank somewhere in the 5th percentile for height on their respective charts (although Zoe has crept up a bit in the weight department).  Numbers aside, both are happy, healthy infants who are doing well in their own way.  Wyatt attempted to sit up while we were there, which made the doc happy.  Zoe wasn't too keen on walking barefoot on a cold floor, so she did not get to show off her running prowess.  The doc made sure that we got an actual appointment card this time and we took our leave.

Wednesday (April 25th) was the ENT.  Sean took Wyatt by himself, as it was an early morning appointment and it interfered with Quinn's schoolbus time.  I was expecting the boys home shortly after 10 but they didn't arrive until 11:30 or so.  I was a bit confused at first, but Sean explained that our bad doctor karma from the day before had spilled over into this appointment as well.  Although they were on time, the ENT was not.  After sitting for almost an hour, the doc wandered in the front door, ignored what was now a packed waiting room, went straight to the back and had the first patient sent in. It was apparent that he was in a shitty mood by the time Wyatt's name was called;  he then proceeded to take it out on Sean.  We haven't been exactly diligent with remembering to put drops of mineral oil in Wyatt's ears (to keep the wax loosened) and the doc let Sean know a little more brusquely than necessary that this wasn't cool.  In fact, his tone suggested negligence.  He even went so far as to accuse Sean of using Q tips on him which, if you don't know, are a no-no with ears as they are self cleaning (Q tips just impact the wax).  Sean tried to explain how we never use Q tips and clean only the external ear and when that was completely ignored, he half-desperately threw in a "you know my wife is a nurse, right?"  for good measure.  This all had very little effect on Dr. Grumpypants who continued by demanding to know when Wyatt had a specific hearing test done.  We do keep on top of all his hearing appointments, but lets face it, we have no idea what exact tests are taking place, just what the results are at the end.  This was not an acceptable answer either and prompted him to place an angry call to the audiologist's office. After extracting the gunk from Wyatt's ears (which, wasn't too bad at all), the boys were then sent back to the waiting room to wait.  During that stay, Sean overheard the secretary talking to the audiologist's office and learned that the specific test that the ENT was peaking about was not done at the last appointment... as it had been done at the one before.  This fact would have been apparent if he had bothered to read Wyatt's chart. A more sheepish ENT called them both back in to let them know the results of the hearing test and that based on that information and the examination that he had just performed, Wy's ears are just fine, thanks.  See you in 6 months.

Flash forward through a whirlwind of my 6 year old's actual birthday (April 26th), one twelve and one 16 hour night shift (April 28th and 29th).  It was now Tuesday of the next week (May 1st) and time for Wyatt's sleep study at Sick Kids.  Prior to this, we had to fill out a sleeping/eating log for 10 days;  it was only through some miracle that I remembered to yell at someone at the last minute to grab it as we were going out the door.  Even for overnight, I had to take a lot of stuff for me and one baby.  Jammies, diapers, wipes, cream, pillows, emergency bottle, Tylenol, toys, 'whoosh whoosh bear', the stroller to push all our stuff around in... plus I brought the laptop "just in case".  Although it turns out that there is a complementary TV in the room (and free WiFi!), I wanted the ability to play a movie or write/fool around on the internet if I couldn't sleep.  I figured that, much like sex in the champagne room, there was no sleep in the sleep study.  I had no idea how right I was going to be. 

It was a good thing that we arrived early as it gave me a little extra time to get lost.  It's a pretty straightforward hospital in most respects, but you have to trust me, getting lost is a specialty of mine.  Sean claims that I have a compass in my head like everyone else, but unlike everyone else, mine is broken and just spins.  I do make up for this with my map skills...  To prove this point, seconds after I discovered a wall map, I found the Atrium and the elevators that I needed.. 

Sick Kids is a fabulous place... I have mentioned this before.  The main elevators are a sunny yellow and the whole place looks like it was designed by a toymaker.  However, if you have vertigo like me, it's a little unnerving getting from the central elevator hall to one of the quads. 

Sick Kids hospital atrium
You can see the yellow elevators on the left.  Photo courtesy of skate_simmo
We were greeted by our Tech who assured me that they do sleep studies on babies all the time. In fact, last week he had three babies there at the same time (the lab has four beds).  We were shown to our room and I set everything up while Wyatt got to play in his crib a bit and stretch out after the car ride.  I realized somewhere during my exploration of the room that psychiatry has ruined me:  the entire time I was setting up, all I could think of was how unsafe the room was.  Including the closet, which was just the right depth and had a bar in there that someone (small) could hang themselves with.

Our room fo the sleep study.  My day bed is in the back there.
Our room.  My daybed is in the back there

My bed.
My bed.  I've slept on a lot worse, trust me.  For my convenience, I'm right next to the hanging closet.

Baby logistics is another specialty of mine.  Knowing that I had to feed him for him to go to sleep and assuming that there was a tangle of wires in his future, I had to work out how we were going to do this.  Our Tech and I talked about it and he would come back to wire my son up when he started to look a little sleepy.  I tried to make Wy feel as comfortable as possible;  he had a few toys there, a few homey smells and I set up the laptop and streamed some music for him (they have a radio on all night for noise and company).  He started to look a little droopy and I called our dude in to (literally!) hook us up.

For those that don't know, during a sleep study you are monitored for quite a few things.  Your heart rate, your breathing and your oxygen/CO2 levels are important.  They also monitor brain waves so that they know how asleep you really are. Finally, they monitor movement, to see how restless you are.  Basically this translates to an ECG, an EEG and an oximeter.  There was also a camera in the room and an observation window if needed.

In total, there were about 20 'leads' or wires about his little person.  Two on each of his legs, four on his chest and the rest on his head.  There was also a O2 sat (oximeter) on his toe an a CO2 monitor on his chest (that was relocated to his back in the middle of the night).  He looked like a little Borg.

You will be assimilated
Resistince is futile.  (He's not crying BTW, just mid-babble)

He got a little Teletubby hat made out of some Surgifix (stretchy tube mesh that they put over IV's and lines and things) to keep the wires on his head.  The Tech put a towel over the lead box on the bed hoping that Wyatt would forget it was there and I was given the OK to feed him.  I set up shop beside the bed, gingerly pulling on the wires all the while hoping there was enough slack.

He wouldn't sleep for love nor money.

Usually he falls asleep during his bedtime "snack".  No dice.  I whipped out a bottle of homogenized and heated it up for him.  Nope.  At one point I  turned on the end of the hockey game, hoping he'd get tired (he watches a lot of hockey with Daddy if he can't sleep at night).  We called Daddy, we sang songs, we rocked, we burped, we got Tylenol.  Finally, about 10:30 he went to sleep in my arms.  I carefully tucked the towel underneath him so that he would not immediately roll on the wires (or catch them in his sleep), put up the side rail and tiptoed to my cot.  I didn't realize how tired I really was until my eyes closed while I was typing on the laptop.  I shut everything down, pulled the blanket over me and drifted off. 

At 2 am I woke to him stirring and was at his side a minute later when he started to cry.  Once he is down, Wyatt does not wake up in the middle of the night unless he is sick.  What I found when I got there was pretty much heart stopping:  all the wires were wrapped around his neck.  I sat my crying boy up and started to gently un-garrote him;  he looked like a kitten tangled in a ball of yarn.  At one point I had to go get the Tech for help as I was afraid of dislodging everything.  It took a bit, but we were able to free him from his wire-y prison. 

It's 2 am and I am tired and happy to be untangled!
I am sooo tired!  I also HATE this hat!
For his trouble, he also ended up with a nasal cannula, which he also hated.

Wyatt's (slightly dislodged) nasal cannula
This thing is 'teh suck'.

You can bet that he was wide awake after that, so I put the radio on over the phone and held and rocked him.  He kept trying to pull out the cannula and that one purple wire in the photo above, so the only thing I could do was to put him on my left shoulder, tuck his one hand into my armpit, hold him (under the wires) under his bum and hold his other arm down with my right arm as it held him over the wires.  And rock.  Which I did...  For a solid hour.  I thought he was asleep at one point and tried to put him down but it didn't work as he was crying and rolling and threatening to get tangled up all over again.  Finally, he was a sleeping rag doll again around 3:15 and I tiptoed back to my cot.  I had a hard time settling as well;  I think I got back to sleep around 4, although I woke up several times to unfamiliar hospital sounds.

My eyes opened again at 10 minutes to 6, so with a sigh, I started quietly packing up the room.  The test ended at 6 and our Tech was there promptly to unhook Wyatt from his torment.  We turned all the lights on and found my little lamb sound asleep.  I hated to wake him up but it was time to go.

Wakey wakey, Wyatt.
Wakey, wakey Wyatt.
The conductive jelly that was in his hair, despite the reassurance that it was water soluble, would NOT come out with warm water and a cloth.  I got him dressed, packed up the room, stripped the beds and was out by 6:30.  I managed to get lost a completely new way before (gratefully) finding the Whaaambulance and my family waiting for me outside the Elm St. entrance.  We rocketed home in the fog and by afternoon, all 5 of us went down for a nap.  After a nice bath, Wyatt also had 95% of the tape and goo out of his hair.

My week did not end there as I had a 12 hour night shift the next night (May 2nd).  I also start a new 4 day tour tomorrow (May 5th) but the kids have settled back into their routine.  I won't know the results of the study for a while.  In fact, I'm not sure how I will find out exactly;  we will probably hear from one of his doctors and/or get a phone call or a letter.  I do know that while I worked the night away, everyone slept very well at home, in their own bed. 

It's been a busy, crazy, cranky and tiring spell for Team Logan, but we have come out the other side of it.  I know I will be happy to see Wednesday morning (May 9th), when I start my next run of 5 days off. One of the good things about blitzing through a bunch of appointments is getting them all over with... which we have, until the next go around in a few months time.  In the meantime, we won't be idle waiting for results.  Instead, life will go on as it does for my raucous household.  Full of laughter, life and love.

Now that's worth the price of a few crappy nights sleep, isn't it?
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